Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia

Article type: Research Article

Authors: Ma, Heather^{a; *} | Kiekhofer, Rachel E. ^b | Hooper, Sarah M.^c | Dulaney, Sarah^b | Possin, Katherine L.^{b; d} | Chiong, Winston^b

Affiliations: [a] University of California, San Francisco School of Medicine, San Francisco, CA, USA | [b] Memory and Aging Center, Department of Neurology, UCSF Weill Institute for Neuroscience, University of California, San Francisco, San Francisco, CA, USA | [c] UCSF/UC Consortium on Law, Science & Health Policy, UC Hastings College of the Law, San Francisco, San Francisco, CA, USA | [d] Global Brain Health Institute, University of California, San Francisco, San Francisco, CA, USA

Correspondence: [*] Correspondence to: Heather Ma, MD, University of California, San Francisco School of Medicine, 533 Parnassus Ave, San Francisco, CA 94143, USA. Tel.: +1 513 309 8432; E-mail: heather.ma@ucsf.edu.

Abstract: Background:Advance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized. Objective:In this study, we evaluate the association between goals of care conversations and advance care planning outcomes. Methods:Retrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care. Results:At time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care. Conclusion:Our findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.

Keywords: Advance care planning, Alzheimer’s disease, dementia, patient preference, terminal care

DOI: 10.3233/JAD-210720

Journal: Journal of Alzheimer's Disease, vol. 83, no. 4, pp. 1767-1773, 2021